Okay so I've got a couple of things going on here and I'm not sure they are related to chiari or not... long story short i was decompressed 10-17-11 and then had to repair a dural leak with meningitis 11-07-11.....
Okay so I still have MOST of my symptoms from prior to surgery and new ones as well..
So the doc says I'm fat.. LOL well not just like that, but she says "Jen, ur up 5lbs from last time, you really need to watch your weight.. Why do you try and get some exercise and try to eat a little healthier" So, healthy, meh not for me.... I would never eat hahahaha I like carbs for whatever reason, I crave them..... Anyways, I decided to take her advice and think of some low impact exercising I could do (besides just walking) and come up with Bicycling... And well that is turning out to be a huge FAIL... I can't even ride a couple of blocks on flat pavement on the easiest setting for gears and I have to stop and give my legs a rest..They feel heavy and wiggly like jello.. I mention this to family and friends and docs and they just say "your out of shape, its going ot take some time" WHAT?!?! My husband who has not ridden a bike in well the whole time we have been together (7yrs) just decided one day to ride his bike to work, almost 5 miles one way... So he is just as out of shape as I am so why doesn't this affect him then??? My arms are the same way, I can''t even put my hair in a NICE ponytail and my arms feel heavy and like jello... Thats what happened to my legs. When I was in the Army, we would run 10miles march for that or even more and I didn't have problems until that "one day" and since I have had problems with "Extreme Muscle Fatigue" SO is this a problem for anyone else???
Breathing? I just feel like I can't get a deep enough breath sometimes(several times a day) and I will yawn alot.. Also, for whatever reason I catch myself holding my breath.. Anyone have problems with that? or wheezing/coughing I quit smoking 3.5yrs ago and I thought I would feel better but I don't, I feel worse... I get winded just walking from the car to the house...
So if you have some of the same issues please share your experiences.. Frankly I am sick of being told I'm fat and lazy... I just don't have enough fight to try and explain to them that it's not that easy for my to just go and exercise and that anything that raises my heart rate makes my head hurt worse... They just look at me like "this fat girl is making excuses" I mean really if it were that easy to be fit and trim, we all would be...
I know exactly how you feel. I also have weakness in my arms and legs. I can’t even stand for more than 10 minutes without pain and numbness taking over. I have long curly hair and I never do anything to it, because my arms are so weak. Yes, I’m out of shape…but, there is more to it than that.
Long before I was affected by Chiari, I whipped myself into shape and enjoyed working out. I physically can’t do it right now. I’ve read that pool excercises are good to do with Chiari, but there is no way that I’m going out in public with a bathing suit on. I also have trouble breathing at times too. This symptom comes and goes and is a fairly new problem. My Brother in Law is a personal trainer, so he thinks I should just push through it and all would be better. If only it were that easy. I did start a diet/healthy eating plan 5 weeks ago and I’ve lost 29.4 lbs so far. If you want the details, message me and I’ll tell you all about it.
Don’t let anyone make you feel bad about yourself! They have no clue about the struggles that we go through. You are NOT lazy and you are NOT just making excuses!
I would give anything if I could workout . I have always been playing sports and swimming & diving and working out my whole life......Just because I Love it. Now it is all I can do to walk through the grocery store. I can't even pick up a gallon of milk because I have extensive neck problems. I can't even swim anymore because every stroke you use your neck in some way. I don't think your family understands. There is an article about chiari headaches, that said basically that when our hearts pump blood it goes to the brain first & displaces Spinal fluid. Thus causing Pressure headaches. So if you are increasing your heartrate you are going to have a major headache. i will look for the articles i posted them so you can read them...Please don't think bad about yourself. I wish everyone understood us.....really understand us !!! Look for the headache post....Tracy Z.
What Tracey said is exactly right. Cerebral Spinal Fluid Flow is controlled by your heart. When your heart beats it sends CSF up your spinal cord and it washes over your brain and comes back down and then starts over with the next beat. So it stands to reason that if you have decreased flow from Chiari and if you increase your heartrate it will make your pressure symptoms worse and make your head hurt. I have also gained weight since my diagnosis and decompression. I have never been overweight and lived an active life before Chiari. I have had some sucess with watching what I eat but increased activity is always a double edged sword. I know what your talking about with your brother in law. I have been called lazy more times than I can count by healthcare proffessionals. I have also been pushed by some of those same people to go beyond my level of comfort and ability. Only to find myself incompasitated by increased pain and symptoms. Only you know what you can do and what you can't do. And as far as being lazy all we have to do is look at our pre diagnosis/symptom lives and our post lives. They look nothing like each other. It amazes me that people think we want to be stuck in the house and not outside or doing things everyone else takes for granted. I would give almost anything to be able to take a long walk with my husband or exersize like I used to. I did recently get my Primary to refer me to pool therapy. That is suppose to be the best exersize for people with Chiari. The pool needs to be warm though or it seizes up my muscles. I have two things for you to look up one is "The Spoon Theory" it's available online and is really great explaining what we go through compared to healthy normal people that can make hundreds of choices everyday what they want to do with their day. The second is a book that I read in 2007 it's very thin but it really helped me think about Chiari different and helped me advocate a little better for myself it's called "Contents Under Pressure" by Raphael D'Alonzo. He was a medical researcher and started feeling ill and he actually figured out on his own after going through the mill with doctors that he had Chiari. At the time I was 6 years past my decompression and my doctors and therapists would not believe me that my continued problems were from Chiari. I heard "You had the surgery you should be better" hundreds of times. My nuerologist was saying I had Fibromialgia. but only my left side was effected. After I read Ray's book I could speak about my condition with more authority because up until then I hadn't found any books about it. Now there are many. I remember going into my nuerologists office and saying "What does fibromialgia have against my left side?" Only after she saw my symptoms duplicated in other patients did she believe me some what and drop the "You only have Fibromialgia on your left side" I have just recently found out that scar tissue has built up and has blocked my CSF at C2 and I am looking at a revision. If your symptoms continue you should ask for a Cine MRI. It measures CSF flow. I begged and pleaded for one for 5 years and finally had to change doctors to get one even though I have always had great insurence. I regret not changing doctors sooner.
Thank you sooooo much gals! I don't know what I would do without you guys! Really!!! I'm just sick of people having this mental picture in there head "sitting on the couch stuffing her face with bonbons and twinkies" I mean I can see it in there eyes and all over there face as I am trying to explain why I can't just go out and run/walk/bike/swim ect... I don't eat the healthiest by any means BUT I don't really eat fast food nor do I eat doughnuts and those kinds of food... I do however like Soda and carb foods like pastas and chips ect..
Anyways, I have looked into getting that book a couple of times but I just never bought it.. I thought after surgery I would be better and wouldn't need it.. I have never heard of the spoon theory, DEF gonna check it out.
Also, these are not the ONLY symptoms I am having.... The list is just as long if not longer that prior to surgery.. I am seeing a NL and he says I have chronic migraine or new daily persistant headache.. So everything he has treated me with thus far has NOT worked.. these include injectables, nasal sprays, maxalt, gabepentin, depacoat, indomethicin, trigger point injections.. NOTHING has helped.. Cept for the Depecoat is making me feel sad, like on the brink of crying most of the time.. UGH....
I have been having a terrible time with my neck these past few days.. Its stiff and get stiffer as the day goes on and by evening I can hardly move my head up down or side to side because of the pain..
Really, THANK YOU SO MUCH for your replies! they mean so much to me!
Zomig is a migraine med that helps me alot. It knocks me out for about 4-5 hours if I take it when I have a full blown headache but sometimes I can take a half of one or a whole one when I feel a headache coming on and it keeps the headache from getting bad and doesn't make as sleepy. It works wonders for me and actually helps with some of my pressure symptoms for a few days after. I use microwave heatpacks for my neck stiffness and pain. The ones like they sell at Grampas Garden. I make mine with flax seed filling but the GG ones are really great. They last forever. I have had so many meds make me sad, depressed and at times suicidal. I get rid of them immediately if I can't take the emotional side effects. This thing is so difficult I don't need to artifically feel awful. I have never tried Depacoat though. We all need to do and take what ever we can to get through the day. I wish you luck just know that you are worth being taken seriously and you are not all those things that people try and lay on us.
luvmy2grls said:
Thank you sooooo much gals! I don't know what I would do without you guys! Really!!! I'm just sick of people having this mental picture in there head "sitting on the couch stuffing her face with bonbons and twinkies" I mean I can see it in there eyes and all over there face as I am trying to explain why I can't just go out and run/walk/bike/swim ect... I don't eat the healthiest by any means BUT I don't really eat fast food nor do I eat doughnuts and those kinds of food... I do however like Soda and carb foods like pastas and chips ect..
Anyways, I have looked into getting that book a couple of times but I just never bought it.. I thought after surgery I would be better and wouldn't need it.. I have never heard of the spoon theory, DEF gonna check it out.
Also, these are not the ONLY symptoms I am having.... The list is just as long if not longer that prior to surgery.. I am seeing a NL and he says I have chronic migraine or new daily persistant headache.. So everything he has treated me with thus far has NOT worked.. these include injectables, nasal sprays, maxalt, gabepentin, depacoat, indomethicin, trigger point injections.. NOTHING has helped.. Cept for the Depecoat is making me feel sad, like on the brink of crying most of the time.. UGH....
I have been having a terrible time with my neck these past few days.. Its stiff and get stiffer as the day goes on and by evening I can hardly move my head up down or side to side because of the pain..
Really, THANK YOU SO MUCH for your replies! they mean so much to me!
I have problems with feeling like my arms are heavy and weak also. The fatigue that I experience on a daily basis is rediculous. I have tried biking and walking but it usually ends up with my symptoms becoming worse. I feel like I can't win. I have been told by my NL that I need to start out slow and work my way up from there. Although, it may sound like a good idea, simple things like trying to dust and vacumm is sometimes all I can handle for a day. I am not overweight, but I have gained weight due to the inactivity. It is very frustrating when other people feel that you are just being lazy or that you need to just need to "snap out of it." I am hoping with time, that I am able to heal more and things will eventually get bettter. I have lost a lot of my hope for this though. I hope things get better for you and all of us. Have a good day!
i just wanted to say i tried to ride my bike, and that caused me more problems as well, and i figured a bike is the wrong excercise "tool" so i decided i needed to get on my husbands non-moveable bike (excercise re-cumbant) i figured the bike even on smooth sidewalks/road the constant josteling of the bike was not helpful to the neck and or other muscles. So while i enjoyed biking I sadly "hung my bike up" and handed it over to my husband :(
while it is discouraging find another non- josteling excercise you can do. perhaps some light yoga, stretching, i am still on the search of what is good for me----
as a matter of fact i have a doctors appointment today and I am sure I am going to get an ear full from my doctor, because i had her run a full blood test, because my old PCP was an idiot wouldnt do a check on my HDL and LDL's, and well my good is low and my bad is ok and my tri's are high---so iam sure shes going to have a field day with me...LOL..
ANYWAY--you said you craved carbs...I use to crave carbs big time-- and i have gotten out of craving the carbs by eating more fresh not canned fruits..& whole wheat toast, Not white toast/bread. and yes eating better foods costs more!! which really stinks -i think if they want us all to eat better it should be cheaper to eat better and more costly to eat what is awful for us...LOL....ya know like hotdogs and lunchmeat..
RIGHT!!!! Ugh, food is just a nightmare!!! lol we typically make our own icecream instead of store bought and we don't eat any canned fruit and as far as bread goes, we eat the whole grain white... wheat bread is toooooo wheaty for me.. lol we also make all of our own noodles (with whole wheat flour, can't taste the difference)...
I was talking with a guy at work last night about food and how the crappiest food is the cheapest and the best food is the most expensive....
so its just a nightmare... lol we make what we can and buy everything else..
I know when my lipids panel was out of whack it was actually because of my thyroid..... and once I got the thyroid crap under control the lipids panel went back to normal... So maybe, that might be part of the reason its soo messed up?????
I'm glad you found a doc who is willing to do bloodwork and go the extra mile to see what is going on...